jesse_the_k: Text reads: "I'm great in bed ... I can sleep for days" (sleep for days)

Disability Studies Quarterly is available free online at The Summer 2017 issue of Disability Studies Quarterly is full of interesting reading that's accessible to folks without a graduate degree.

Acknowledging pain and limitation is a welcome turn in Disability Studies theorizing: a long-term consequence of the intersection of feminism with DS. Women's disability is so often driven by illness, that we've brought willingness to profess that pain.

UW-Madison Prof. Ellen Samuels writes so well, so deeply, so clearly about living as disabled people in time:

Three meanings of 'crip time' )

Three more viewpoints on "crip time" in the complete article at

jesse_the_k: Pill Headed Stick Person (pill head)
My doc just told me about a double-blind RCT study showing combo aspirin & acetaminophen was as effective as oral morphine (and both better than placebo) for post-surgical dental pain.

I'm doing it now and it helps )

jesse_the_k: White girl with braids grinning under large Russian beaver hat (JK 10 happy hat)
Something awesomely good is happening in relation to the "meralgia paresthetica" I mentioned recently. Now that I know the cause is an entrapped nerve, and the result is purely sensory (no danger of losing function), my pain is much less annoying. I've managed to blunt the second arrow.
Buddhist background )

I dare to think I will be finding more ways as I continue to live.
jesse_the_k: Callum Keith Rennie shouts "Fuck no!"  (Fuck no sez CKR!)
...which I haven't yet blogged about, things I was grateful for.

But right now I have a muscle cramp so bad in my leg that even the internet can't distract me.

Sucks to be me!
jesse_the_k: those words in red on white sign (be aware of invisibility)
A year ago I enthused about the joys of meditation, in particular "Mindfulness-Based Stress Reduction." I've continued my formal practice of MBSR (15 - 25 minutes nightly before bed. I meditate lying down, to minimize pain crosstalk.) But wait, there's more!

I'm now learning about "Self-Compassion Meditation," which has been even more helpful for me. (I'm sure spending a year directing a kindly, curious attention to anything floating through my brain and body has enabled me to apply SCM at any time.) I can now do "informal practice" whenever I need it. The key to SCM is it rides along with the acknowledgement of pain. The fact that I'm beginning to lash myself on my perceived defects, or enduring the throbbing of my augmented ankle, or weeping over the daily news— that pain itself triggers my SCM response.

Self-Compassion Meditation—Kristin Neff
Dr Neff's site and book support a meditation practice for folks who live with mental, physical, and psychic pain. Her approach is firmly grounded in Buddhist spirituality, but is very accessible to those of us who bounce off religion.
In the brief month I've been using it, I've developed the skill of responding to negative events with compassion, not fear, anxiety, self-punishment, or despair.
The whole site is well worth reading: this resources page offers free downloads of guided meditations and writing exercises:
She also provides a self-compassion test which helps you to realize when you may be suffering needlessly, and how self-compassion could make your life less painful.

Resources mentioned last year )
jesse_the_k: Close up of clean young weasel's open mouth and teeth (screaming brain weasel)
So back on Valentine's Day I talked up my new exercise-and-meditation routine. I embraced the possibility of strengthening my muscles, increasing my aerobic capacity, smoothing out my moods.

In the past two months I've realized not all are possible. One stroke forward, one stroke back, one nose full of choking chlorine )
Make those weasels laugh! I had tripped myself, yet again. But I also reset the timer for 21 minutes, and maybe I'll spend a year just enjoying the swimming as I'm doing it. Lose the aspirational nonsense for a while, let the pool be a place I go and let go, flow, float, flutter, and visit with my gym-sisters.
jesse_the_k: Peeled orange with one section pulled out (shared sweetness)
Not simply a browser dump, these links have been filtered through the spongy portions of my brain with artisanal care:

The CASTLE actors who play Esposito and Ryan made a trailer for a goofy movie with a serious message about racism and frankly I don't know if there ever will be a movie, but the trailer was excellent (Vimeo link, no captions, loud music)

Interested in Sherlock BBC fanfic? It just so happens I've been reading almost nothing else for a year and a half. I've been diligently annotating my reading, so if you visit the Archive of Our Own with this link, you'll find at least 44 fics with several paragraphs on each as to why it must be read.

As one Me-Fite put it, This is like some crazy almost unbelievable novel. The CIA, the Cold war, the Nazis, Tolstoy, the Soviets, Kissinger, Nixon, Ford, Carter, Chinese communists and the Kuomintang. What's that you say? You already knew about Countess Tolstoy helping thousands of Mongols ( Werhmacht veterans all) to immigrate to New Jersey? I bet this fabulous MetaFilter article tells you even more.

Final one is out-of-plumb in several dimensions. I'm usually all about the social model and how impairment + social discrimination = disability. I'm also hesitant about video documentary: there's too much bandwidth on the subtext channel for me to judge the accuracy. Yet, there's a couple women of color making a documentary about what ails me*, and it seems like they're off on the right foot. What do you think? (Click to start video, captioned.)

* Myalgic Encephalomyelitis aka Myalgic Encephalopathy aka Chronic Fatigue Syndrome.
jesse_the_k: Alan Cummings, all glammed up in blue eyeshadow and filmy red dress vamps in lime green room under the words "drama quee (Alan the drama queen)
Thank you for good wishes and enabling my "stream of hypochondria-consciousness." Both helped!

My actual doctor was consulted, judged my excoriated backside "cellulitis," judged the handoff of many diagnostic tasks to PAs risky, and threw another five days of cephelexin at it just for niceness. Doc says I can go back to the pool whenever I feel like it. Strength is returning apace. Pretty slow pace, but it's the right direction.

Up North has been rescheduled for the third week in August. It's almost like time travel.

In the meantime Up North weather has traveled down south, thank heavens. It was sixty-six degrees this AM. Strolling in gentle breezes with Simpson skies.

Life is swell.
jesse_the_k: Underwater picture of chubby woman stroking and blowing bubbles with a grin (lynne cox swimming)
I had one of those encounters in the weeks before WisCon. I want to record it for posterity, and I welcome your thoughts as well.
What she said, what I did and didn't say )
The ideal response is not having it matter it all. Not surprisingly, Dave Hingsburger's recent entry explores what it's like when we can really not care. Dave Hingsburger's recent entry explores what it's like when we can really not care. )
jesse_the_k: NYC tourist postcard reads "The Muppets Take Methadone" (muppets on methadone)
Back in town, I was discussing pain with my acupuncturist (as you do). Verbalizing my experience helped me realize why my #1 pain remedy works as it does.

My neck, shoulders, arms, and lower back are subject to fibromyalgia pain. It can start with a tiny trigger — an uninvited touch to my shoulder, or skewing my neck when sleeping, or reaching too far to prevent a fall — and then spreads as a dense burning underneath my skin. The pain feels like it's larger than my body.

For two decades, both ice packs and heat packs have helped with this pain. Today I understood why. When fibro pain expands beyond my own body map, I no longer feel capable of controlling it — it's outside my purview.

The cold and heat packs work in the same way; for simplicity I'll describe the effect with the cold version.

The pack serves different functions as it gradually warms up. Initially, the ice cold sensation simply trumps the pain. But as the pack warms, the temperature difference between my skin and the throb of the pain is like a strobe light outlining the edge of my body. These bright lights illuminate which muscles and tendons to consciously relax, as well as scare away the terrorizing shades of uncontrollable pain.

The cold packs are better analgesics, when pain has already taken hold. The hot packs are kinder, and hug places before they start screaming. I don't use electric heating pads, because it's too easy to fall asleep on them and they will burn you. There are various pack systems marketed to physical and occupational therapists; one can get two cases (to cinch around one's shoulder or leg) and then three packs. Two live in the freezer and one dallies near the microwave.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (shovel bucket)
is almost always sleeping. Whatever the doc was testing by having my suck on dental sponges, turned out to be "within normal limits." So it's plain old hypothyroid. And the way she treats hypothyroid is:

1. test TSH, free T4, free T3
2. Are the numbers ok yet?
3. Nope? Increase levothyroxine by 0.125 mcg
4. Wait 6 weeks and repeat

I've been doing this since last November and I'm well and truly tired of it. I'm moving as slow as a hippo in mud. Today I woke up to take my morning meds, went back to sleep for 3 hours, had breakfast, thought about reading some, pondered going swimming, relaxed in my bed, slept 3 more hours, watched pointless TV for 20 minutes, and had dinner.

Yeah, that's really boring.

The only good part is I'm giving myself permission not to flagellate for my lack of accomplishment. Hypersomnia is a real sign of a measurable disease.

Also both shoulders are cranky. One of them is so sensitive I can't turn over in the bed. It's intermittent; it's not so bad that it's inhibiting other ADLs; when I imagine interacting with an orthopod my blood runs cold.
jesse_the_k: White woman with glasses laughing under large straw hat (JK 52 happy hat)
Following the sterling example of [personal profile] wrdnrd, I'm inviting anyone coming to WisCon who has questions to speak up! I'll answer 'em here. If the answers annoy you, you can know to avoid me. Or maybe there will be fascinating answers and you can plan to share a meal or a stroll.

I'm a 155lb, white woman with short pepper-and-salt brown hair and thick purple glasses. Which is probably irrelevant because the first thing you'll notice is my zooming black power wheelchair with red bag on the back. I'm 5'3" standing, but 4'3" sitting. I'll be wear a hat (oh! having to choose!) with my badge on the front.

Better Interactions through Advance Notice
  • If we're speaking for more than two sentences, please get to my eye level, cause I can't tilt my head back.

  • NO HUGS, thank you. Any weight on my hypersensitive shoulders means throbbing all weekend long.

  • Hold hands! I love holding hands.

  • Don't rest your weight on my chair. I feel the tiniest shift as pain down my body, so lean on a wall.

  • PRONOUNS: She, you, me but mostly we!

  • ANXIETY: Fundamental building block of my spirit, these days. I assume the worst, and reliably misinterpret subtle cues. I particularly welcome open invitations.

  • COMPREHENSION: I'll have a better chance of understanding you if you look in my eyes when you talk.

  • SINGLE-TASKING is a talent; multitasking is a horror show.

  • There's more than one wheelchair user at WisCon. I am not Liz Henry, Susanne Blom, Stef Maruch ... or any of the other wheelers whose names elude me right now.

  • Resources
  • I'm local to Madison and I can help you find things.

  • I've been on the Concom for a while, and would be delighted to talk about volunteering.

  • if you're having a blood-sugar crash, I always have at least two emergency GF, vegan bars

  • I'll be at the hotel but if you're having a desperate craving for a dog to play with, it can be arranged.

  • I love assistive technology and will happily talk about it for ever.

    Friday 9pm Making the Most of WisCon Starts wicked late at night for me but I decided to risk it. If you have any suggestions for things to communicate, feel free to let me know!

    Saturday 2:30p Beyond Etiquette: How Not to Disable People with Impairments This one should be a gas! [ profile] haddayr as well as two experienced and educated Anns (who aren't on DW/LJ), and [personal profile] sasha_feather

    Monday 10a The Tiptree Award Winners That Everyone Should ReadI'm moderating this one -- the panelists have all been Tiptree jurors so I'm sure they'll have lots to say.
    jesse_the_k: mirror reflection of 1/3 of my head, creating a central third eye, a heart shaped face, and a super-pucker mouth (JK oh really?)
    Thank you so much to all of you for your warm thoughts and good vibes. They clearly worked. I'm sitting up and typing! I have two fewer generative organs and one less viciously twisted cyst. I also have a variety of brain-buzzing drugs on board, so can't think of much else to say.

    Wait, how about a delicious recipe for pulled pork?

    Savory Pulled Pork )
    jesse_the_k: Human in professorial suit but with head of Golden Retriever, labeled "Woof" (doctor dog to you)
    I loathe typing his name, but Jack Kevorkian is in the news again, because someone's turned his life into a docudrama. Follow the link to learn the many things that "everybody knows" about Kevorkian which just ain't true. The blogger, Stephen Drake, has been closely following Kevorkian's activities for two decades.
    jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
    Jane Brody, the NYTimes' "personal health" columnist, has an intriguing article about the effectiveness of hypnosis for a wide variety of problems, including anxiety, depression, nicotine addiction, and speeding post-surgical healing.


    The big surprise was the "it couldn't possibly have worked and yet it did" factor, which squarely addresses my "I'm too rational for this" doubts about hypnosis' power.

    She even provides a handy link to a "find a hypnotist" site.

    So, wise flist, any experiences with hypnotists?
    jesse_the_k: Fully unclothed dorsal Paul Gross from Slings & Arrows (naked & proud)
    Many artistic expressions of life with chronic pain appear at the Mark Collen is the founding artist, who continues to solicit submissions from around the world.

    I'd idly dreamed of transforming some of that thick stack of test results into sculpture:

    "Hey Doc, Have You Figured It Out Yet?" does just that. Collen's illuminated tower of radiographic images brings to mind a kiosk advertising cultural delights, as well as a cooling tower on a power plant. Powerful images indeed--these could be helpful exemplars when trying to convey the reality of chronic pain to those around us who don't get it (yet).
    Collen thumbnail
    jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
    Yes I'm totally late to the party when it comes to the delightfully cantankerous blog called

    I Blame the Patriarchy

    but at least I finally got a clue. What's making me jump up & down and go whee! right now is this excellent rant about cancer.

    In which the fabulously cranky blogger spews forth on just how shitty it is to survive cancer and then have to deal with all kinds of crappy "side effects" of the treatment, and be expected not to whine.

    So, go read it already, OK?

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    Jesse the K

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